Hi Jane, I would like to share my experience with rectal cancer and the aftermath with you as well. I was diagnosed back in July 1007 with rectal cancer (5 cm) and had my first surgery (resection with ileostomy) on Aug 16 07. Wore the bag for 4 months during radiation and chemo (5FU via pump). Had the reversal on 12/10/07 and contrary to some of the success stories you've read here, I have not had much success. The first month after the reversal surgery was a living hell for me. Very frequent bowel movements (10-15 a day) and very irritating (multiple fissures). I must have gone through every cream available but none helped much. Went back to chemo 1/08 (oxiplatin and 5fu pump). During the chemo I experienced constipation which was a relief actually! I've had some days and nights with many BM's and some accidents at night. I finished my chemo 2 weeks ago and it looks like I may have to resort to daily enemas as was outlined in a post here: viewtopic.php?f=1&t=1623&p=9853&hilit=+enema#p9853It may be the only way I can return to work (been un-employed for a year). I hope you have better luck than I did in the future.Rick

Glad you are doing well. I will have the ileo reversal soon as well. I am glad to hear the the pain is under control. I was worried when I read that the pain was severe. Was it the pump for pain medication you were on? How long were you off of chemo before they reversed your ileo?

I had/have a fair amount of pain (had my reversal this past Tus the 27th). Worst of course were the 1st two days, but I was up walking to th bathrrom myself the first day. I was released from the hospital on Friday - certainly the shortest hospital stay so far!

I was on a dilaudid PCA (pump) and had a fentanyl patch (interestingly had just weened myself off fentanyl ). Pain was very well managed. Here at home, I have the patch, and tale oral diladid when needed....which is still fairly often. Believe me though, muc better than either the surgery to give me the ileostomy or my resection.

Thanks everyone - I think it is obvious that others are benefiting from the info posted on this thread too.

As for me, I am on Day 6 post-reversal, and things are pretty good. Yesterday for some reason the surgical pain increased and I had to take more pain drugs than I normally do. Still quite a bit of seepage, all normal. I moved my bowels twice the day before I was released...just small amounts of diarrhea. Nothing really since. I am not gonna worry about that yet. There simply may not be enough stuff in there (due to almost 3 months of diversion with the bag, and a pretty much just liquid diet for a few days) that needs to come out. I don't quite feel constipated, but if it goes on much longer, I will call the doc. Hopefully all heals well and quickly so I can start my FOLFOX asap.

Hi Jane, I am one who is definitely checking up on you. I am so glad to hear you are doing so well. You are giving me hope!I have my take down/reversal scheduled for June 23rd. Getting very nervous!!!!I am just starting to feel good from the LAR surgery. I had some infection issues and I am a wimp when it comes to pain on top of that.I will be glad the bag is gone, I just hope my body is too. I do not want to be a slave to the toilet. This scares me more that the LAR surgery. I am sure that may sound crazy. I just knew that would that surgery would one day resolve itself. I am not sure about this one.Keep getting better!!!Please keep posting your progress.

If you have a loop ileostomy then the surgery is a very simple procedure. Just sew it up and pook it back inside of you. The hole in your stomach will need to heal is all. Some docs will let that heal on its own and some will choose to stitch it together. The bowels will take some time to get to their new normal and since you are doing chemo you'll need to be careful with diahreah. I expect it will be difficult for you to really learn about your new plumbing until you have completed chemo and given it some time.

frank2001 wrote:Thank you all for your comments regarding ileostomy reversal...I have had my bag on since March 11 and was hoping to have it reversed on June 11....but oncologist wants me to continue with my Chemo for a couple of months longer. Not something I was very happy with but going along with his advice...I am very happy I was sent this site from the American Cancer S. ...I have always had a million questions since I was diagonosed with Rectal Cancer back in Nov 07...and its good to come to this forum to ask or post a question....Thank you all for you comments..Frank

It sounds like we are in the same boat! Im having my reversal June 10 th '08! Ive had my pouch since Feb. Im too going through prevenative chemo now(folfox) and on mon I had to nix my treatment due to a bit low white count! So Hopefully all will go well and get it to be back in a normal range. I too was dx in Nov 07...I was 32 then. My oncologist is giving me week off my chemo after my surgery and then back at it! I hope that's enough time? Im just concerned with bowel issues too....I am passing itty bitty (like pea size) of stool even w/my bag... I believe God's preparing my body to have normal function. I feel that "urgency" and can "hold" it ...and my surgeon says that's a good sign. WEll best of luck to you too.

I'm done with my treatments so I am now in the reversal thought stage. After discussing it with my surgeon, I decided to take the summer off from being a patient, and now I think I'll wait until January 09, so I can be at work as long as possible (they held my position and paid me for the six-months I was being treated.)With all the same questions (my colon removal was 12 inches) he responded: The first month will see alot of progress as far as bowel function goes. Then, it will not be noticeable, but your system will be adapting slowly...at the year mark, your progress has mostly completed, and that will be considered the "new" normal. If this is correct, it's OK by me. I've fully adapted to life with the ostomy, so the wait doesn't matter to me. It's just another roll of the dice on this cancer journey!

frank2001 wrote:Thank you all for your comments regarding ileostomy reversal...I have had my bag on since March 11 and was hoping to have it reversed on June 11....but oncologist wants me to continue with my Chemo for a couple of months longer. Not something I was very happy with but going along with his advice...I am very happy I was sent this site from the American Cancer S. ...I have always had a million questions since I was diagonosed with Rectal Cancer back in Nov 07...and its good to come to this forum to ask or post a question....Thank you all for you comments..Frank

It sounds like we are in the same boat! Im having my reversal June 10 th '08! Ive had my pouch since Feb. Im too going through prevenative chemo now(folfox) and on mon I had to nix my treatment due to a bit low white count! So Hopefully all will go well and get it to be back in a normal range. I too was dx in Nov 07...I was 32 then. My oncologist is giving me week off my chemo after my surgery and then back at it! I hope that's enough time? Im just concerned with bowel issues too....I am passing itty bitty (like pea size) of stool even w/my bag... I believe God's preparing my body to have normal function. I feel that "urgency" and can "hold" it ...and my surgeon says that's a good sign. WEll best of luck to you too.

Getting the reversal and still doing chemo will be tough. I had mine after chemo was over. Diahreah caused by the chemo in addition to the new plumbing could cause some sore situations. I'd suggest you get metamucil wafers and immodium. Right after my reversal I took 4 immodium daily, 2 in the morning, 2 at night. I have an IRA (most of the colon gone), not a lot different then a Jpouch. Its also recommended that you get a good understanding on the difference between soluble fiber and insoluble fiber. You should focus on simple soluble fibers early on and not add in insoluble fiber until you get your system stabilized. A good web site (its actually for IBS but it applies to us too) is here...

I have a colostomy (since August 2006) and not an ileostomy, but I think I'll keep it. I have never been off of chemo in 18 months and it's much easier to deal with the diarrhea in a bag. For almost a year I was obsessed with the thoughts of getting it reversed as my surgeon initially said he would NEVER reverse it as I had been through too much already. So...when he said we would talk about it when chemo was completed I was thrilled. Now...about one year later I have adjusted to it and it is part of my "new normal." I don't think I want to take the chance at this point of dealing with what COULD happen with a reversal. I know for most people reversals turn out just fine. I just don't want to be one of those people where it doesn't turn out fine. While I really don't like having "the bag" for some of us it truly is a quality of life thing.

Good luck to all of you with reversals. I hope all goes well with you and I must admit...I'm a bit envious but I'm also a wimp and don't want to put myself through any more trauma than I already have.

Pam

I Peter 5:10-11

Diagnosed 9/06 Stage IV, 19 mo. chemo, now out of chemo options except for possible clinical trials. 9/3/08 First of two Sir-Spheres procedures.

*Faith is the wind that blows the sail of our ship to the desired destination."

PammySue_51 wrote:I have a colostomy (since August 2006) and not an ileostomy, but I think I'll keep it. I have never been off of chemo in 18 months and it's much easier to deal with the diarrhea in a bag. For almost a year I was obsessed with the thoughts of getting it reversed as my surgeon initially said he would NEVER reverse it as I had been through too much already. So...when he said we would talk about it when chemo was completed I was thrilled. Now...about one year later I have adjusted to it and it is part of my "new normal." I don't think I want to take the chance at this point of dealing with what COULD happen with a reversal. I know for most people reversals turn out just fine. I just don't want to be one of those people where it doesn't turn out fine. While I really don't like having "the bag" for some of us it truly is a quality of life thing.

Good luck to all of you with reversals. I hope all goes well with you and I must admit...I'm a bit envious but I'm also a wimp and don't want to put myself through any more trauma than I already have.

I know how you feel. I ended up with my ileostomy at my colectomy because my reconnection developed a leak and I had to have a second surgery while still in the hospital to disconnect and create the ileostomy. So 7 months later, after chemo was over, I was going in to get the ilostomy reversed and worried that the same thing would happen with the reconnection and thinking that it was in a way just cosmetic and why was I going through the reversal and putting myself at risk. Also the unknown of knowing how my bowels would behave and if I would be a slave to the bathroom or not. Well, the surgery worked great, 5 days in the hospital, and with time I got to my new normal fairly easily.

I was diagnosed with rectal cancer May 2008. I had radiation and chemo that summer. In the fall , I had surgery and an ileostomy. Then I went through hell with chemo - I was pretty sick with it. After 7 months , I had an ileostomy reversal. At first, I thought that I would never leave the bathroom. I had to wear Depends - I couldn't trust myself to make it to the bathroom. But after about 3 weeks, I started being able to hold it. I pretty well eat anything I want now but I still have times when I can't leave the house for fear of not making it to the bathroom. This usually last for an hour or two and then I'm okay. I take immodium when I'm going out and that really helps. Sometimes my stool is so acidic and it really hurts but that usually goes away after a while. I am so glad to have the reversal and I feel like I can go on with my life now. I had a ct scan done and so far everything is okay.

Hello...I just had my reversal on the 19th of august and recovery is just like healing from the first only diff is an extra site of staples in the closure and pooping out everything you consume quicker than usual. no solid food yet got one more week to go for that. i'm walking slowly but you must remember no solids and to stay off your feet as much as possible until staples removed...so glad that bag is gone. i am currently losing 1 to 2 pounds a day, went from 205 since all begin now down to 153...good luck and feel free to ask . Kimry

I am the one who started this thread, over a year ago...so, a little update on the subject:

I ended up have a stricture caused by the ileostomy reversal, which put me in the hospital for most of June and July 2008 (off and on - the longest stretch was a month). It took them awhile to discover the problem, as I presented as having a blockage, but they couldn't find it with films, etc. Finally it was found through colonoscopy. As a result, in the middle of July of 2008, I had to have another resection, this time of the small bowel, taking my cecum, terminal ileum, ileocecal valve, and my appendix. I was unable to eat most of June and July last year...I got to be under 100 lbs (I am 5'6", and weighed 130 when diagnosed). So, I basically didn't "have" a summer last year! After I healed from that surgery, I re-started my chemo, which finally ended the first week of January of this year.

I have had bowel problems of one sort or another ongoing. They attempted a rectal dilation a few months ago, but it didn't work. So,I was going to have another abdominal surgery in July of this year, to address what appears to be a "kink" from scar tissue. My regular followup scan showed that it appeared my cancer had metastasized to my lungs, so I had a thoracotomy instead, on July 10. Good news is they found no cancer...they are still not sure what the nodules that appeared to be growing were, as they couldn't find anything, and lung tissue biopsy was negative. I have a scan coming up at the end of Sept or beginning of October to see what is going on with the other lung...possibility I may still have the 2nd lung surgery, we will have to see.

Point is, that put the abdominal surgery/issues on the back burner. I am still having problems - alternating constipation and diarrhea, and off and on bowel incontinence (the last couple of days, actually, have been bad with the latter problem).

I DO NOT want a permanent colostomy. My ileostomy depressed me so much (and I developed sensitivity to the appliance adhesive, bad skin irritation problems) that I cannot imagine having to live with that again. My sensitivity to adhesive has become out and out allergic reaction - the surgical tape after my thoracotomy gave me huge blisters all over where it touched. They had to re-dress everything with paper tape. Ya can't use paper tape on an ostomy appliance.

I am hoping that my body at some point learns to poop normally. Right now I am always constipated, and the diarrhea is softer/liquid stuff that goes AROUND the backed up stuff, basically.

The only thing I can offer, and I can't guarantee it will help but have you tired Metamucil wafers. The help with constipation and diarrhea. Might be something to try if you haven't yet. Try one wafer with each meal.